As of today, she can go to 800mg.
At 700mg, things were not good. At 600mg the seizures had dropped so much that some days I actually forgot I have them. When I saw Dr. Neuro A he was pleased by this but since I am still having them he said to continue to up the dosage. He said that since so much progress had occurred that we didn’t need to talk about hospitalizing me. This made me VERY happy. I joked with him that it might not be the drug but rather since the last time I saw him when he talked about hospitals and surgery that maybe he had just scared the crap out of me and that made the seizures better. He laughed and said he doubted that because he had just come from a guy in another exam room whom he TRIED to scare the crap out of because the guy won’t quit drinking and won’t accept that his seizures keep getting worse because of that. He said he doesn’t think he’s so good at scaring the crap out of people.
So he raised me to 700mg and it almost immediately started getting worse. Now, four weeks in, it’s getting pretty bad again. The strength and the frequency have increased a lot. He said that if the seizures hadn’t gone away in a month to up it to 800mg. So I did that starting today. I can’t tell you how badly I need 800mg to work. If it doesn’t, I know that when I see him in two months that he will want to put me in the hospital. It isn’t that I’m afraid of a 48 hour EEG. It’s that I’m afraid that when it’s done he’ll say “Hey lets talk about cutting your brain open!” or maybe even worse, honestly, he’ll say “Hey I don’t know what the hell to do at this point and I think you’re just never going to get better, and probably will continue to get worse. Have a nice day!”
I’ve started back at work part time and in about six weeks I’ll start full time. I swear. If all this had to happen I wish it could have happened during the six months I wasn’t working. That’s all I need. To have to go into the hospital and maybe have brain surgery right after I start a new job. “Hi. I’m so happy to be working here! Now I’m going to take a couple of months off to let some guy diddle around in my temporal lobe. See ya! But save my desk, OK?”
Here’s to 800mg. All my fingers and toes are crossed.
Filed under: Dr. Neuro A, Dr. Neuro B, Husband, Neuro, RX, Seizure, Texas Comprehensive Epilepsy Program
Hello Lamictal, my old friend,
I’ve come to swallow you again,
Because a pressure softly creeping,
Left its burps while I was sleeping,
And the damage that was planted in my brain
Still remains
And makes the sound of burping.
Hope. That’s what I left the TxCompEpiProg with yesterday. Oh, and a really complicated prescription for ramping up on Lamictal again. And a secret satisfaction that my NEW neurologist, Dr. Neuro B, thinks that my OLD neurologist, Dr. Neuro A, done did me wrong. Because that’s what I thought, too. And it’s nice to be considered right by an expert.
It went sort of like this:
From the smiling, organized, competent clerk at the front desk to the happy, smiling, competent nurse, to the friendly, kind, competent resident, to the smarter than is probably legal, experienced, competent doctor, I felt like I was in the hands of people who not only COULD help me, but seriously wanted to.
I went there expecting to be put off AGAIN, to be a zebra AGAIN, to be sent off with more orders for more tests and no real hope. I left there with a definitive diagnosis, not a differential, a prescription for a drug that helped me tremendously in the past, a request for a new MRI, an offer of continuing care, and a some confidence that maybe maybe maybe I can and will get better, and certainly can and will stop getting worse.
First, the diagnosis. Dr. Neuro B, after reviewing all my prior test results, my seizure toteboard, my meds lists, and symptoms, was saying things like “Usually, with epilepsy, blah blah” and “Epilepsy often blah blah”. I interrupt and say, “Are you telling me I have epilepsy?” His reply was “Yes, you definately have epilepsy. No question. Your EEG is textbook.” (Remember, Dr. Neuro A’s response to this EXACT question was, “No, I’m not telling you that. I’m telling you I don’t know what you have.”) I shook Dr. Neuro B’s hand and thanked him. Finally.
Next, the prescription. Dr. Neuro B reviewed my meds list and said, “So if the Lamictal helped you so much, when it quit working, why did you get taken off of it? Why didn’t you dose get increased?” My answer was, “I asked that, too, and was told that when an AED quits working that you just have to stop it, that it will never work for you again.” His response was a look that said “What the fuck???” and he said “Your dose should have been doubled when it stopped working. You should not have been taken off Lamictal.” I told him that I agreed, and that I wanted to go back on Lamictal if only for the great side effects (spontaneous weight loss and randy like a teenager). He laughed, commiserated with my husband about the things husbands have to do for their wives, and confirmed that yes he intention is to take me up to double the dose I was on when I stopped. I almost kissed the man.
Next, the MRI. I imagine one of the reasons doctors become niche specialists is because of the cool toys they get. I had my MRI films with me and he reviewed them but ordered another brain MRI. He apparently has the biggest, baddest magnet in the south at his disposal and is very proud of that. He said he wants a better resolution and contrast. I don’t mind this at all, and am happy to cooperate willingly with a doctor who is willing to not disregard what I tell him about my experiences, to give me a lot of information without me having to drag it out of him, and to have the guts to tell me when he thinks something has been done wrong. Five big stars for Dr. Neuro B. Minus 6 for Dr. Neuro A.
He also volunteered that while my particular symptomolgy is “rare”, that it isn’t unheard of, that there are reported cases, and that he’s had experience with intractable belching as a manifestation of seizures. Remember, Dr. Neuro A at first said that mine was the first ever recorded case and later said that yes there had been ONE case reported, and that that patient had been put in a mental hospital for 20 years.
When I asked Dr. Neuro B about the video EEG, which is what Dr. Neuro A had originally wanted me to go to the TxCompEpiProg for, he said there is no need for that sort of thing. He said my regular EEG clearly showed all that was needed to make a definitive diagnosis, and that we would only consider a video EEG is the meds didn’t work and we had to consider surgery as an option. He said that was “way down the road”.
So – this is the point where my life has come to. The best day I’ve had in months was the day I got diagnosed as an Epileptic.
And I would be remiss if I didn’t express my deep appreciation and love for my husband and his support. He is totally committed to seeing me through this entire ordeal. He took the day off from work yesterday to go to this appointment with me. He calmed me when I was so nervous in the car on the way over that I almost puked. He held my hand through it all, made sure all the right questions got asked, reinforced my impressions and opinions about how everything was handled, and has just flat out loved me like crazy for 15 years. Thank you, dear husband. Thank you.
Lamictal???? WORK YOUR MAGIC!!
Filed under: Brain Bits, Dr. Neuro A, Dr. PCP, Fear, Memory, Neuro, RX, Seizure, Texas Comprehensive Epilepsy Program, Words
Tomorrow I double the Trileptal dosage. So far, it’s been very similar to my experience with the Keppra. I’m very afraid – so scared that two weeks from now I’ll be disassembling again.
This is what happened with the Keppra:
I had hit a wall on Lamictal. It had quit working. The burping had returned quickly to its prior frequency, so Dr. Neuro A said to start taking Keppra and come down off the Lamictal. Did that. Two weeks later, upped the Keppra.
The burping had never responded to the Keppra, and I had experienced a sudden increase in cognitive problems that I already had (I’ve listed them before – most of them have to do with words and visual processing) noticed since the accident. When I increased the Keppra, within a matter of 4-5 days I really degenerated.
The burping was worse than ever before. It was almost constant meaning that a literal 99% of my day was saturated with burping, often long, extremely strong series that made it impossible for me to get air in, and a few times actually caused me to vomit. I couldn’t think straight. I couldn’t remember 5 minutes ago or three days ago. I couldn’t follow a conversation, or remember an appointment. I was losing words left and right. I had become disorganized.
And I experienced three totally new problems: I was getting lost while driving, and I physically couldn’t get words to come out of my mouth. I had the word, but I couldn’t get my voice to push the sound out of my lips. Also, I began having bizarre nerve experiences in two ways. First, random, occasional shocks that were only a second in duration. They felt like an electric needle was being jabbed into me. Very fast, very strong. Usually on my right calf or arm, sometimes on my left leg. Next, on my right upper thigh there is a patch of skin about the size of my hand that, since 1985, has been dead to touch on the surface as the result of damage during surgery to remove my gallbladder. But suddenly it had come alive with sensation. Burning, itching sensation that wouldn’t stop. I scratched it red over and over.
I was totally terrified. Bits and pieces of my brain were going away. I couldn’t make a decision. I couldn’t understand instructions. It reached a crisis point. I met with Dr. Neuro A who did a number of things. She a) took me off the Keppra over a week’s time, said wait two weeks and “if you’re still burping” start taking Trileptal and come back in 8 weeks. b) referred me to the Texas Comprehensive Epilepsy Program at UT Med and Hermann. c) wrote a script for a variety of vitamin b related blood tests, and d) sent me on my way with no guidance or support, dumping me on my Dr. PCP as an easy out.
You see, I was falling apart in her office. I was in tears. I was holding the script for the blood tests in one hand and the paper with the TxCompEpiProg info in the other, crying, utterly unable to figure out what to do. We had just discussed everything I just typed here and she sat there looking at me in my disassembled state. She asked “Why do you look so distressed?” If I hadn’t been so close to just folding up I would have laughed hysterically. My response was “Because I am very distressed!” There was more. We’ll leave it at, it ended badly.
So here I am, ready to up the Trileptal dose. Let’s all watch closely boys and girls, and see if I go away again.
Filed under: Brain Bits, Dr. Neuro A, Faces, Fear, Husband, Memory, Seizure, Words
Really, my brain is all I’ve got going for me. I guess this might be true of everyone when it comes right down to it, since you know, it makes you take in air and metabolize nutrients and all that.
But in the world, some people get by on personality while still being idiots and some people get by on looks while still being idiots. Some people, people like me, just get by on their brains. I don’t have my father’s charm, or my mother’s beauty.
What I always have had is a freakish combination of their brains, both of which were pretty spiffy all by themselves.
So it’s my brain that gets me a job I can put up with, have a little fun at, survive off the income from, and still not get stuck with so much responsibility that I want to carve my own spleen out with a spoon just to be under a little less pressure. And it’s my brain that gains me my closest, dearest friends because they are all a special type of people: smart, wicked humors, deep curiosities about a wide variety of subjects, outrage over injustice, and the sense to know good beer even if they still choose to drink pig swill. My brain keeps me out of trouble, and my brain entertains me to no end. My brain attracted my precious husband regardless of what he says about my boobs.
If you take all of that into consideration you can see as how the thought of my BRAIN not being right could be, well, a little disturbing.
I am:
Losing words
Having trouble getting words out of my mouth
Having lots of trouble focusing a given task
Having lots of trouble remembering anything – where are my keys? when is my next physical therapy appointment? do I have any clean underwear? where the hell is that building I’ve driven to a hundred times in my life?
Unable to recognize faces
Making bad decisions
Using bad judgement
Doubting myself and my perceptions
Having lots of trouble with conjunctions and other small words when writing
A couple of these things I’ve had trouble with all my life. Some of them are new, post accident. They have all gotten a lot worse over the last six months.
The burping, which Dr. Neuro A says is seizures, started about a year and a half ago. The accident was two years ago.
I am terrified that I am losing bits and pieces of my mind and that it is going to continue to get worse. I am terrified that one day I will wake up and not recognize my husband’s face, just like I didn’t know him in the trauma center. I am terrified.
And so begins the third anti-seizure medication. We’ll play catch up later on the other two. But today is Trileptal (oxcarbazepine) day.
When I last saw* Dr. Neuro A, she said “After you come off of the Keppra (levetiracetam), wait two weeks and if you’re still burping, start this.” She handed me a bunch of samples.
This statement is indicative of my entire problem with this doctor. IF I’M STILL BURPING? LIKE, IT IS GOING TO MIRACULOUSLY JUST STOP???? After about a YEAR AND A HALF????
Well I’m 8 days out from Keppra and screw this. The burping has returned to “normal” which is pretty fucking ABNORMAL. I went over the whole discussion with Husband tonight and we agreed there’s no real point in waiting so I took half a little ugly mustard brown pill tonight.
Let’s see how this goes. I’m looking for four things:
1. Will it decrease the burping, maybe dramatically, like the Lamictal (lamotrigine) did?
2. Will it make me crazy like the Keppra did?
3. Will it kill my appetite and cause me to loose an additional 34 pounds in about 8 weeks?
4. Will it make me bat shit horny like the other two did?**
Please note that the order of these four item’s importance sometimes changes for me throughout the day. Ha! It only took three or four days for side effects #3 and #4 to kick in with the Lamictal, and it only took a short while for side effect #2 to kick in with the Keppra, although admittedly it built to a phantasm of a finale.
*Unfortunately not the last time I’ll see her, but more about that later.
**That part hasn’t completely worn off, thank goodness!
In case I forget. 